21 June 2013
RD-Connect has joined over 70 institutions across the world in signing up to the Global Alliance, a new initiative to encourage sharing of linked clinical and omics data.
Inspired by the examples of the World Wide Web Consortium and the Human Genome Project, the Alliance aims to accelerate progress in medicine by encouraging widespread access to research data. It will develop a common framework for the technical, operational and ethical standards needed to ensure the interoperability of genomic research platforms. Its goal is to bring together the research, clinical and disease advocacy communities and the private sector to create an information platform that is open and accessible and provides common standards, formats and tools to stakeholders in the genomic research community.
The goals of the Alliance are very much in line with those of RD-Connect, which has specific tasks dedicated to data sharing infrastructure, bioinformatics tool development, ethics, patient engagement, informed consent and the regulatory environment. “Becoming part of the global alliance was a natural step for RD-Connect,” explains coordinator Hanns Lochmüller. “We are mandated by the EU and the International Rare Diseases Research Consortium to create a central platform for rare disease research data, but we were always mindful of the need to ensure interoperability with other omics platforms out there, platforms in which rare diseases may be only part of the story. Aligning RD-Connect’s platform with the developments in the Alliance will help us ensure that no matter where the data comes in or ends up, it will be accessible as part of a global system.”
Hanns also acknowledges the role the Alliance can play in driving the scientific community to improve data sharing. “As well as the technical and privacy standards that have to be developed, there are still some cultural hurdles to data sharing to be overcome. We have to convince investigators that it’s in their best interests to share, show them that it helps them do better science. The more data is shared, the more value these systems have for all researchers, and the more quickly patients will benefit. The outcomes of our data sharing and bioinformatics jamboree in July will be fed into this broader initiative, and we’re looking forward to being part of the Alliance’s developments in the coming months.”
Image credit NASA/Chris Hadfield